This week, I was (as my case manager worded it) "put through the ringer".
Let's start with Monday morning.
With the reappearance of some frightening symptoms over the weekend, I went in to see my GI specialist. I spoke with him about those symptoms as well as the sleeping episode that I had last weekend.
This resulted in booking an emergency scope for Tuesday morning, and a suggestion to get a head CT to try and see if there's any internal reason for the abnormal sleep disturbance.
I also had to do bloodwork and a sample right after the appointment. So we head down to the lab, get the necessary bloodwork taken care of, grab the sample bottle, head home, finish that, head back to the lab to drop it off, quickly stop at home for some lunch, and then we had to get going to the public health office for my vaccinations.
Let me, first off, say that there was no issue getting these vaccines and I did NOT have to bring the copious amounts of paperwork that the "booking clerk" had told me was necessary.
Unfortunately, because I had recently received my Lupron injection the week prior, my left arm was still sore from that, and the pneumo-vax made it even worse. She put one vaccine in each arm to monitor any possible reactions, and I was required to stay in the office for half an hour after just to make sure that my throat didn't close up.
That night I was feeling pretty icky overall, nervous about the possible major flare up, and simply not looking forward to the rest of the week.
Tuesday morning, I head on down to the hospital (after an early morning of prep) to get a sigmoidoscopy. Now, because of my history and how many scopes I have had, and because it was kind of an urgent appointment, we did the scope with absolutely no sedation. He managed to get about 5 or so inches past the pouch as well. The good news is that the inflammation from the flare-up is concentrated to one particular spot. So, for the next month, I have to use two different topical medications - one in the morning, one at night. Sounds pretty straight forward right? Well, both of these medications have caused severe allergic reactions, but specifically when ingested. So - because I am only using them topically, we are HOPING that it doesn't cause a reaction... And also hoping that it takes down the inflammation enough to avoid a full course of corticosteroids. Welcome back, Pouchitis.
Even though I had no sedation, I was pretty exhausted, so I slept in the afternoon and then went to bed early. Wednesday was my break day!! (Yay!)
Thursday!
Okay, so I had booked an appointment with my optometrist because of three shadows in my vision in my left eye. At first I thought that it was simply my Macular Degeneration progressing (I shouldn't say 'simply' because that is terrifying in itself), but I thought I should get it checked anyways. Plus, the largest shadow is actually in my peripheral vision, not my central vision, which doesn't really make sense.
Anyways - I wanted to make sure I got it looked at. So he took a couple of scans and what not. Turns out, it is not my Macular Degeneration progressing, but it is also not any floaters or retinal detachment, it isn't cataracts, in fact there isn't much that he could see on the scans. This sounds like good news right? Not necessarily. Next thing I know he is telling me about optic neuritis (the inflammation of the optic nerve) and the various causes (which range from other inflammatory conditions, de-myelination caused from MS, to mini-strokes, etc....) and sends me a referral to an ophthalmologist to get a CT and/or MRI to see how deep the problem goes and what might be able to be done for it. Turns out, the vision loss from this episode of inflammation, could be permanent.
So I am expecting an appointment in the next few weeks or so (these things always take time). Nope. Monday morning, first appointment, 8am. The ophthalmologist's office leaves a second message saying that if I experience any increased pain or any decreased vision, to go immediately to the hospital. Turns out that they are really concerned.
I have mixed feelings about this. I am THRILLED that they are taking it seriously and fitting me in so quickly... But I am also terrified. Having a specialist concerned is a good thing and a daunting thing.
I also found out this week exactly what the immunodeficiency specialist is testing me for. It is something called Chronic Granulomatous Disorder of Childhood. (Yeah, try saying that 5 times quickly!)
Basically it would mean that my white blood cells are inefficient and cannot fight off bacterial and fungal infections - which could explain the cause of all of the abscesses that I get on my skin all the time. Let's hope this is a false alarm.
Then, today, I met with my family doctor and updated my case manager over the phone, and picked up a prescription.
Monday morning I had NO idea that this week was going to be quite this intimidating.
Now, instead of "just" worrying about the immunodeficiency testing, the hereditary angioedema medication possibilities, my regular days of pain and swelling, and stressing about when my hysterectomy will be scheduled, NOW I have to worry about a possible full Crohn's flare-up, possible permanent vision loss NOT caused by the already existing eye disease, a possible problem in my brain causing the sleeping episode, and paying attention to make sure that I don't get a severe allergic reaction from the topical treatments.....
It definitely added some more confusion to my life... And I feel a little defeated this week.
BUT - hopefully I will have some more concrete answers next week. Good or bad, at least I will know what I am dealing with. And this weekend I am seeing some amazing friends and I am going to thoroughly enjoy myself and try to take my mind off of all of this stress.
Don't ask how.
I am not sure yet.
But it CAN be done!
And it WILL happen. Even for only an hour or two.
So unless my eye blows up or I lose another portion of vision, I am taking a break from doctors until Monday morning!!
Happy Weekend!